Does full CHC funding cover these things.

My daughter has received full CHC funding since April 2018.

She is still being asked to pay for what I consider are still care needs.
she lives in her own rented property and has care provider covering her care 24/7.

my understanding is that she/we should not be asked to top up care needs. but they are asking her to pay for:-

Gloves for carers to use when giving her personal care. (Fresh pair at least 5/6 times per day)
waterproof plastic sheets to lay on bed when doing personal care. (actual incontinent pads provided by NHS)
Mouth swabs
She is PEG fed so has to pay for Mepore Film to cover PEG site when bathing and hydrotherapy.

Now my problem is whether these items are classed as ‘topping up’ or are they consider a necissity for health care.

thanks for your help.


Hi Pam … chapter and verse … and the kitchen sink … from the Just Caring Legal website :

Should you be asked to pay an NHS Continuing Healthcare "top-up"?


Should You Be Asked To Pay an NHS Continuing Healthcare “Top-Up” ?
With a loved one living in a residential or nursing home will probably be familiar with the concept of top-up fees. These are third-party payments which bridge the gap between the cost of care home fees and the amount the local authority is willing to pay. They are so common that the charity Independent Age calls them a “secret subsidy” propping up the residential care system. So you may not be surprised if a social or healthcare professional asks you for an NHS Continuing Healthcare “top-up” to help meet the costs of care. But here are some things you should know before you agree.

There is no such thing as an NHS Continuing Healthcare “top-up”

While the legislation governing local authority social care expressly provides for “topping up” care fees (though only in specific circumstances), the NHS are not permitted to ask for an NHS Continuing Healthcare “top-up” for assessed needs. The only way you can “top up” an NHS Continuing Healthcare package is if you choose to pay for additional private services. These are over and above services to meet your full needs as set out in your care plan. They should be provided by different staff and preferably in a different setting, though there should be liaison where necessary to ensure continuity of care.
What do the rules on NHS Continuing Healthcare say about covering the cost of care ?

The National Framework says the funding package should be sufficient to meet all needs in the care plan. The CCG should base this on its knowledge of the local costs of services for those needs. It is also important that the models of support and the provider used are appropriate to the individual’s needs. And they should have the confidence of the person receiving the services.

So why is one in five recipients paying an NHS Continuing Healthcare top-up?

Yes that’s right – one in five. According to Continuing to Care?, a major report released before Christmas by the Continuing Healthcare Alliance, almost 20% of those awarded NHS Continuing Healthcare said the funding did not cover the full costs of their care, resulting in them having to pay “top-up” fees. This fits in with what we are hearing from clients here at Just Caring Legal.

Could social workers be blurring the lines between local authority and NHS Continuing Healthcare “top-ups” ?
We are hearing of an increasing number of cases in which social workers are taking the main role in dealing with NHS Continuing Healthcare cases. Could this be blurring the lines between NHS and local authority funding? It can be difficult for those applying for NHS Continuing Healthcare to understand the different rules that apply to each, around areas such as top-up fees. It is right that social workers play a vital role in NHS Continuing Healthcare cases as part of a multi-disciplinary team of professionals assessing care needs. But once eligibility is established for NHS Continuing Healthcare, like all NHS care it is designed to be free at the point of use.

This is one of the founding principles of our NHS and its constitution: that it should provide a comprehensive service, available to all based on clinical need – not on the ability to pay.

Make what you will of the above … it is a legal view !

( Now added to the main CHC / NHS Continuing Healthcare thread ! )

well, I will pursue it and see what answers I get. not holding my breath!!!

The legal opinion above will be your " Ace in the hole. "

The very last paragraph above …

Good luck Pamela. They dont make it easy do they? Even once you get funding you have to keep fighting for what sbould be freely given.

Thinking of you all. It’s hubby’s re assessment on Thursday, so going through the anxiety too.

good luck with that Pet66.

all I can say is prepare and research as much as you can. write it all down clearly for yourself to give answers. its not easy, and they have ways of turning things around
but stick to your guns, you know your caree the best, and as always answers about the worst case day, not about a good day.

I will be thinking of you on Thursday, and be there in spirit with you.

pam x

Thank you Pamela,
I’ve been through this, last year, and although hubby’s needs are even more complex now, I know the things that are said. ie, needs are now being met etc. They are not, in many ways, not through the fault of staff, but his situation. He, sadly is very unpredictable. Poor man, in and out of hospital like a yo yo, the most recent was last week. Will be checking his records are up to date which I and my daughter does regularly.
I’m on my guard, if the one nurse is in the meeting, because she is inclined to say that she never has a problem with him. Like it’s a personal slur on her if she does. With the exception of the domestic staff, everyone has had ’ problems’ with him, mostly to do with his personal needs, or taking certain medications. My lovely husband, who never swore at women or lashed out at anyone. He probably cussed at the pub with mates. Breaks my heart, but I am fighting his corner, and rights, which gives me strength. I’ve been doing the checks myself on the downloaded tool. Gives me heads up.
Hope you are ok, because I know it’s a very anxious time,

I have contacted my gp who could not give me a definite answer and told me to contact MP, so I have. we will see.

Pam … don’t forget that Just Caring invites contact …

thank you chris.

i have just left a message with Just Caring, looking forward to hear what they have to say.


Your welcome.

Let’s hope that they prove their worth ???

If what we find on Internet searches for … CHC PROBLEMS / TOP UP FEES … is correct … many " Reliable " links … thousands out there are paying someone for FREE CHC !!!

CareToBeDifferent goes over this ground … and more :

Are You Paying Top-Up Fees Unnecessarily? - Care to be Different

Just an extract to sample the flavour :


If the NHS Continuing Healthcare funded agreed package in place is not sufficient to pay for all the assessed individual’s clinical care needs, then you need to act.

Rather than the care home just getting away with charging you top-up fees because it suits them, get them to apply to the CCG on your behalf, and explain why the agreed NHS budget allocated for the individual is now insufficient to meet their increased (challenging) clinical health needs; it is for the care home to re-negotiate the budget with the CCG and apply for more funding if it is costing them more to care for the individual than budgeted for.
Remember: care is supposed to be free at the point of need – so the CCG should meet the reasonable cost of increased care needs – not you! So take action and push for your rights – it could save you a fortune in unnecessary top-up fees.

If, however, the care is being already funded by the Local Authority, then the care home should ask the Local Authority to pay the for top up fees, not the family.

Hooray. CCG are now adamant that the consumables should be covered by care provider and not have to be paid for by my daughter. it took the intervention of our MP to sort it. CCG said originally we had to pay for them.

They do try it on don’t they.


Congratulations Pamela … also confirms one whole section on that now infamous maze of a thread.

( Time now to introduce an " Entrance fee " for that thread ? )

Trouble is … for every one Pamela , nine more are paying " Top up " fees without a second thought ?

Well done Pamela.

I hope you’ve made the CEO of the CCG eat humble pie, by getting them to write a formal, written apology for all the upset they have caused you?


yes, I do feel rather proud of myself for not taking ‘no’ for an answer. I even had care provider CEO phone me and grovel.

Thank you for all your support.

Your welcome , Pamela.